March 19, 2024

Study Looks at the Burden of Illness of Lennox–Gastaut Syndrome on Patients, Caregivers, and Society

Article published by Wiley Online Library

In a recent systematic literature review, researchers evaluated the global burden of illness of Lennox-Gastaut Syndrome (LGS) including clinical symptom burden, care requirements, quality of life, comorbidities, caregiver burden, economic burden, and treatment burden. LGS is a rare developmental and epileptic encephalopathy that is estimated to account for 1%–10% of childhood epilepsies. In the study, published articles with predetermined criteria were identified with 113 articles included for review. A high clinical symptom burden of LGS was identified including high seizure frequency and non-seizure symptoms such as developmental delay and intellectual disability, leading to low quality of life and substantial care requirements, with the latter including daily function assistance for mobility, eating, and toileting. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems including fatigue and sleep disturbances, social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically-treated seizure events, inpatient costs, and medication requirements. Drug-resistant epilepsy was common, and many individuals required use of multiple medications and treatment changes over time. In summary, a high burden of LGS on individuals, caregivers, and healthcare systems was identified. The burden may be alleviated by reducing the clinical symptoms. These findings highlight the need for a greater understanding and better definitions for the broad spectrum of LGS symptoms and the development of treatments to alleviate non-seizure symptoms.